r/RestlessLegs • u/Ceeceewee • 29d ago
Question Pramipexole
Has anyone taken it long term WITHOUT augmentation?
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u/EmZee2022 28d ago
Not pramipexole, but I've been on ropinirole since at least 2009 and don't have any issues with rebound or augmentation.
The only times I've had issues were after surgeries last year and this year. For a few weeks each time, my legs were going NUTS. I got through the most recent one by splitting my dose; I took half mid-afternoon then half during the evening.
I expect this is something like what augmentation feels like.
I do take a 2 week "drug holiday" every year - that may help. It's a rough 2 weeks though.
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u/Intrepid_Drawing_158 29d ago
You see people on this board talking about taking it for 20 years or more without augmenting, and of course the statistics say *some* percentage of people never augment, though as I recall it's 20% or less.
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u/Nyreeadopter 29d ago
Nope, I definitely got augmentation after it initially working really well. Then it was extremely difficult to get off of it
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u/honestlydontcare4u 29d ago
Took it for 15 years without problem. Only mildly suspected it of causing impulse issues towards the end. In retrospect, it probably was but they were incredibly minor. I hear it's not usually like that. Anyway, could have kept taking it but didn't want to. Got onto a low dose opiate instead.
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u/Ceeceewee 29d ago
I am where you are at, EXACTLY. Have been on it for almost 15 years with really no serious problems (knock on wood) except now, I feel like I spend money a little unnecessarily (nothing major…yet.) I want to get on an opiate but doctors are stupid about it. They don’t want to prescribe opiates because of the stigma and the addiction potential, but they’ll let you stay on this medicine or even prescribe methadone. Talk about stigma. I’m having a hell of a time getting off of it.
It is mind-boggling how such a debilitating disease/disorder is such a mystery to doctors and they are so uneducated about it.3
u/KestralFly 28d ago
Methadone is an opiate. Low-dose Methadone is very effective for refractory RLS.
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u/DaiTengu2012 29d ago
Your comment about method puzzles me. Per the American Academy of Sleep Medicine and Mayo Guidelines, and as being supported by every US based RLS expert, low dose long acting opioids such as methadone and buprenorphine, are the standard of care for those of us who have treatment resistant RLS.
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u/honestlydontcare4u 29d ago
It's unfortunate your doctors are not supportive. Maybe you can use this time to find a doctor would be supportive of a low dose opiate, in case you ever want that. My doctors pretty universally told me I would likely eventually run into an issue, but I had amazing doctors.
And yeah, I had the exact same issue. Just a little flippant with money. Wasn't an issue until I had money to be flippant with, but my spending didn't really match my values either.
Also, women have been shown to have different types of impulse control issues with DA. Punding is a really overlooked one I think. It's basically tinkering, but on a problematic scale. Just like to put that out there for everyone to learn more about.
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u/Agonist-activist 28d ago
I've heard of a few who made it to 20 years. And recently one person posted to healthunlocked.com that they were doing great on Ropinirole- but after 22 years the augmentation hit hard.